Recent diagnosis

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  • #14955

    k.darnborough
    Participant

    So my mum has recently been diagnosed with choangliacarcinoma (28th May 2019).  This came as a complete shock as it was only discovered by a routine health check blood test.  A CT scan and subsequent biopsy shows that the tumour is inoperable due to its site and that it is ‘advanced.’  Having now read up on this type of cancer it seems that symptoms only appear when it is at an advanced state. My mum has had no symptoms – yes she gets tired – but she is 74 so took that as normal. She has slight itchy skin but nothing to really take notice of.

    So we are now on the chemotherapy trail.  Cis/gem.  She is two treatment in and so far no adverse side effects.

    so for the moment it’s fingers crossed on a daily basis – a ct scan will be done after cycle 3. I suppose my question is does this chemotherapy hold the tumour – have read that sometimes it does not.

    My mum has chosen to not know any prognosis and has just been amazing since diagnosis. Trying to think of today only and not what’s to come which is quite hard at times.

    For now my mum is ok so I am ok

    thanks for reading

    #14958

    Helen_ammf
    Moderator

    Dear k.darnboroug

    Thank you for posting to AMMF’s discussion forum, although we are all sorry to learn that your Mum has been diagnosed with cholangiocarcinoma.

    The combination of Gemcitabine and Cisplatin chemos that your Mum is on  is currently the world standard 1st line treatment for those with an inoperable CCA.  It’s good news that your Mum is tolerating this well.

    Many people find that their tumour/s shrink or are stabilised on this treatment, but for some it doesn’t seem to help.  This will be checked at the CT scan.  If this treatment isn’t working for your Mum, or if she starts getting very difficult side effects, then her consultant could consider other treatments for her.

    You could ask them to consider mFolfox (Oxaliplatin, L-folinic acid and 5-fluorouracil), a 2nd line treatment which has been tested under the recently completed ABC-06 clinical trial. For information on the presentation of the ABC-06 findings earlier this year, see:  https://ammf.org.uk/2019/06/27/the-abc-06-study-first-results-out/

    You or your Mum could also about molecular profiling to see what mutations might be driving your her cancer.  Depending what is found, she then might be eligible for one of the targeted therapy trials. To find out more about molecular profiling see: http://sarahcannonresearch.co.uk/molecular-profiling/personalised-medicine/

    There is more information about clinical trials on AMMF’s website, see: https://ammf.org.uk/clinical-trials/

    Hopefully others will come in on this thread soon, to share their experience which I’m sure would be helpful for you.

    With kindest regards to you and your Mum

    Helen

     

    Please note it is not appropriate for AMMF to give medical advice or recommendations, and all details provided are for information purposes only.

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